Quick Links
Resources
About mySMAteam
Powered By
Can someone of this group tell me something about myostatin inhibitors for people with SMA?
I have SMA3
I’m 36 and was diagnosed at age 5. I just had my first baby almost 5 months ago. It’s tough. So worth it but I’m struggling during the day with him due to lack of strength and covid… read more
So after the neurologist gave me the SMA diagnosis in Jan, my mom remembered that we were sent to a genetic specialist when I was 4(1984); and SMA wasnt discussed at all.
Just curious if that is a common occurrence, or was SMA just not as well know in 1984?
Wow!
This body shaming problem is for everyone i guess, not for people with sma only. But anyway I wanted to ask as a girl struggling with that feeling time to time
Well Personally I don't much like wearing anything that Clings to My Body, because then My Crooked Body really shows. So I tend to buy what I like, but I may buy just a tad bit larger just so it's not… read more
I am 40+ years old, have held jobs, am reasonably intelligent, but I still look like a teenager aside from a few grey hairs. My dad is 83, a little hard of hearing. My attendant, the only reliable attendant I can find in the entire state, is nearly the same age, is physically in much better shape, but is even harder of hearing. So I was dealing with my father who gets very grouchie when he hasnt eaten trying to help him with cooking which he doesnt know how to do and caregiver of course walks… read more
Totally understand how that goes with unreliable care attendants, one's that you really don't want to be alone with or need to be either, or one's that actually really show up early or on time every… read more
Does scoliosis cause death
So...I don't want to paint an overly rosy picture. The healing after my surgery took months. It wasn't a pleasant experience, the healing was very painful and I had complications that led to a… read more
How common or likely is it for people with SMA to die from aspirating?
I think it's best to ask your neurologist.
